I remember the event in St. Louis so clearly. We had a wonderful day where dozens of health, faith, and community leaders assembled to take on advance care planning efforts in the region. Attendees shared intimate personal stories and designed plans for community engagement. During a coffee break, a Black woman who’d joined us pulled me aside to ask, “How did you decide to name this The Conversation Project? In my community, ‘the conversation’ is the one we have with our children about police brutality.”
The Conversation Project is all about encouraging people to speak up about what matters most when it comes to end-of-life care. Those of you who are involved in promoting advance care planning in your communities likely hear and use the term “good death” regularly. You might even quote Dr. Atul Gawande’s brilliant line from Being Mortal: “Our ultimate goal, after all, is not a good death but a good life to the very end.”
This woman was gently reminding me what a privilege it is to focus on having a “good death.” For her, and for her community, the more urgent focus was on staying alive.
The May 2020 murders of George Floyd, Breonna Taylor, Ahmaud Arbery, Tony McDade, and Nina Pop, alongside the shameful racial inequities of COVID-19 mortality, lay bare the disparities of how life gets to be lived in this country.
If we advocate for a “good death,” we must stand shoulder to shoulder with the fight for the equal opportunity to live a good life. Black Lives Matter. We must work to dismantle systemic racism in our hearts, homes, and communities – now and moving forward. In particular, we must work to ensure that equity becomes embedded in every effort to improve advance care planning – and to end the inequities we know exist at the end of life.
The Conversation Project, as an initiative of the Institute for Healthcare Improvement, stands fully with this statement on racial injustice. The Conversation Project has a long way to go in terms of this work and we are committed to doing better and learning alongside you. Based on lessons and leaders from the field, here are a few ideas:
If you don’t feel you know enough to speak out just yet, then listen. Learn. Be challenged. Change can be uncomfortable. Don’t speak over those from whom you’re learning. A good way to start learning is to read about issues involving equity and end-of-life care and to follow the work of those leading in this area. We will be doing the same. We’ve included some recommendations below and hope you’ll share more pieces and people with us so we can amplify their message.
We recognize that many of our partners are White, and we are asking you to act with love and courage. As you meet new people in your community or online, be humble. You will probably mess up. Don’t get defensive; be gentle on yourself but stay committed to improving. Realize that impact matters more than intent. Recognize disparities; name them. Call out racism. Take action to end it. Build relationships and partnerships with local leaders/groups representing new demographics for you. Get involved in the social and racial justice organizations in your community.
Recognize how this topic is received in your local community, especially in light of recent events. A good place to start is sharing stories. The Conversation Project’s Naomi Fedna shared her personal experience here. “The reality is that I have a lower life expectancy than my white counterparts,” she writes. “So, when I am asked to talk about dying, I don’t think of it as an event that will happen in my old age. I think about it as soon, as imminent. The tremble, the lump [in my throat] are visceral responses to my full understanding of what it means to live (and die) in the intersection of being black and a woman.”
Our goal has always been to focus on what matters most to people – in their lives, their wishes for medical care, their relationships. For many, what matters most is being respected, valued, and able to live in peace, not just rest in peace.
Suggested resources – please comment below with more we should include.
- Racial Equity Institute
- Undoing Racism by the People’s Institute for Survival and Beyond
- Building Racial Equity Trainings by Race Forward
- Advancing Racial Justice in Organizations by Interaction Institute for Social Change
- Showing Up for Racial Justice is a national network of groups and individuals working to undermine white supremacy and to work toward racial justice. Through community organizing, mobilizing, and education, SURJ moves white people to act as part of a multi-racial majority for justice with passion and accountability.
- Twitter @ShowUp4RJ
- The Disparities Solutions Center
- Twitter – @MGHDisparities
- Racial Equity Tools
- Ethno Geriatrics Training: modules from the Stanford School of Medicine for health care providers to raise awareness of specific cultural, racial, and ethnic influences on health and health care of older people from specific ethnic backgrounds.
- Race at the End of Life
- How Structural Racism Affects Healthcare
- University of Alabama – Community members train doctors on culturally appropriate palliative care
- Phyllis R. Coolen: Cultural Relevance in End-of-Life Care: an article addressing three major areas of cultural relevance in end-of-life care: cultural competency in clinical practice; advance directives; and pain management.
- 1619, a podcast from The New York Times
- Pod Save the People
- Avoiding Cultural Assumptions in Palliative Care ─ An Interview with Two Sojourns Scholars: an episode from Cambia Health Solutions’ HealthChangers Podcast.
- Endwell video – Explore how clinician bias contributes to disparities in diagnosis, treatment and health outcomes.
- Endwell video – Creating a Movement
- Endwell video – The Accidental Activist
- Endwell video – A Quest for Community
- Challenges and cultural barriers faced by Asians and Latinos at the end of life
- Racial disparities in the end-of-life care – how mistrust keeps many African Americans away from hospice
Social Media Accounts:
- Kami Fletcher of Radical Death Studies
- Twitter @kamifletcher36
- Alua Arthur of Going with Grace
- Instagram @going_with_grace
- Hosted a webinar with six leaders
- For information on the call: Sayin’ It Louder: A Conversation about “A Good Death” in a racist society
- For the recording of the call: Listen to the call recording here.
- Corinne Alstrom-Sonne, co-founder of BIPOC Death Talk, founder of Toronto LGBTQ Death Café
- Instagram @deathcoachcorinne
- Jillian Tullis – Associate Professor at the University of San Diego
- Instagram @profjillian
- Pastor Corey Kennard
- Instagram @iampastorcorey
- African Americans in Gerontology
- Between the World and Me, Ta-Nehisi Coates
- The Immortal Life of Henrietta Lacks, Rebecca Skloot
- Stamped from the Beginning: The Definitive History of Racist Ideas in America, Ibram X. Kendi
- Just Mercy: A Story of Justice and Redemption, Bryan Stevenson
- The Fire Next Time, James Baldwin
- The Souls of Black Folk, W.E.B Du Bois
- I Know Why the Caged Bird Sings, Maya Angelou
- Me and White Supremacy: Combat Racism, Change the World, and Become a Good Ancestor, Layla F. Saad
Thank you for this very thoughtful and thorough post. I will use it as a guiding light in the discussion I’m having with the membership of the national end-of-life Doula alliance. You have made many good points and helped us further “the conversation.” Thank you for being a leader who cares.
Thank you Kate for pointing out what “the conversation” means for different communities. Thank you too to Naomi Fedna for highlighting the profound biases that govern too many of our healthcare decisions. Nothing short of both collective and individual introspection and a willingness to be honest will get us to where I believe we ALL want to be.
Thank you for the insightful observations, the call to action within our professional communities, and the helpful resources. It’s so easy to get caught up in the immediate or day-to-day challenges, and your writing has helped me remember that it’s important also to commit time and energy to larger, systemic problems.
This post is why I continue to follow The Conversation Project and its compassionate staff.